Acromegaly Support Group

I just wanted to take some time and post some food for thought. Feel free to take it as advice or ignore it.

Here goes. This disease is tough. Many of us felt sick for years and went undiagnosed even though we went to doctors and searched for answers. We are unlucky to have this problem but lucky to finally be given some sort of explanation for our illness so that we can at least take some sort of action.

That being said, we still struggle. Some of us from complications with medicine, some from tumor mass issues, some from surgical complications, and lots with the overwhelming long term ravages of the disease.

One of the worst things that can happen on top of these things is having a doctor that for whatever reason is not a good fit for you. Maybe he or she doesn't listen. Maybe they are hard to get a hold of. Maybe they don't explain things. Maybe you feel like they just aren't trying to help you. Or maybe they just don't know how.

I had all of these problems with a few of my doctors and I kept going back over and over thinking maybe it was my fault, maybe I wasn't communicating or doing my part. But that wasn't the case. And when I realized that I had asked myself over and over what I could do to help myself, I realized I had done everything I could except switch doctors.

And I will tell you it made all the difference in the world. I cannot even begin to explain the weight that has been lifted off of my shoulders. Now, I call and get a hold of my doctor or his/her nurse...every time. Questions are not left unanswered and things are done in a timely fashion AND pain relief is being addressed as well as many other things. There is teamwork with my new doctors. They talk and their collaboration has helped immensely.

The point of me saying this is to encourage you all to evaluate your position with your doctor. He or she is supposed to help you, not frustrate you. You should feel comfortable asking questions and always be making progress. If you are not and you have the ability and resources to do so.......try another doctor. Please. I implore you. This disease is too difficult to deal with as it is and you do not need the person who is supposed to help you hurting you. Often times in doctors we mistake stubbornness and arrogance for confidence. Make sure you take the time to understand if the doctor is really putting thought into your case or just doing things a certain way because he or she has always done it that way.

Also, sometimes you go to a doctor or have continued confidence in him or her based on a reference. It is important to evaluate that reference as well. Positive feedback from someone who worked with a doctor or knows him/her personally is not particularly meaningful as it cannot encompass the experience and results as a patient. If someone is just giving you their opinion....then okay, but making sweeping claims about a doctor when you have not been a patient of theirs is downright irresponsible. And we should take extra care for the recommendations we make on this website.

I just wanted to stress these things because making these changes has REALLY helped me and I hope I can help someone else. Lots of doctors are great and helpful. But it is easy to feel hopeless when you get one that isn't. And there can be bumps in the road with a great doctor so I am not saying dump your doc for any old reason. But your life is literally in their hands and if you don't feel like the hands are helpful then you owe it to yourself to make the move.

Wishing everyone happiness and health!

Feel free to sound off. Feel empowered!
Posted on 10/08/09, 04:10 pm